The Weight of Guilt

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by an incredible sense of guilt.  Did I push my son too hard? Did I expect too much? I was later vindicated but I was reminded  the overwhelming guilt that comes with being a parent of a child with diabetes…or maybe its just me.

Well meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we ask was that it? Was that why my son developed this disease? Did I not breast feed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt.  Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance.

But what about a balance with diabetes and my youngest son? Did it take over everything? Did he hate me because I punished him for diabetes related offenses? Did he feel that I had robbed him of his childhood by focusing on testing and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope.I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

One other area of guilt seems to always flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. Its the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home. It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  I wonder what my child’s blood glucose level is at any given time.  I worry and wonder if he is taking proper care of himself, but I have a break.  I  don’t really have to be awake at night. I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Guilt doesn’t get me anywhere. It’s a backwards looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  Guilt must be released not harbored…and I do.  I have made mistakes but my kids are okay.  They are strong.  They are relatively healthy.  They are smart.  They do me proud.  Why waste energy with guilt? Move forward and smile.  It’s the only way to go.

Gifts like this make me realize that all is very well indeed.
Gifts like this make me realize that all is very well indeed.

6 thoughts on “The Weight of Guilt”

  1. Thanks for this post! I think for the most part I do ok not “wasting” energy on guilt but there are so many guilt opportunities! ;). I do worry about my non D daughter feeling like she gets enough attention, for sure. And definitely, the one that made me cry reading it, was feeling guilty when I don’t have to care for my daughter with D and knowing my burden is temporary and my D daughter will have to deal forever…that is hard to think about. Cure please!! ;). (My Daughter with D is 5, diagnosed 2 years ago, my non D is 7). Thanks so much for your blog.

  2. You made me cry a little, even though my daughter is only 7, I already think about her adult life, the obstacles she will have to overcome where every other child takes for granted, the exact same guilt I have regarding the breast feeding, the vaccination, the intro of GMO food too early, the cows milk, the viral infections, everything… And it is hard to deal with life as there was no diabetes, I’m learning and constantly telling myself and family around that diabetes and blood sugar numbers are not to be the first thing to talk to at dinners but it still is, every number is taken personally and the guilt game go on :(, I really like your blogs.

  3. Before I became a D-parent, I had all the typical guilt moments: I sent them to school when I thought that sniffle was nothing and they turned out to be really sick, I snapped at them when my patience ran out, etc. But as a D-parent, guilt takes on a whole new level. Every out of range number, watching them have a bad low, sleeping through your night check alarm, etc, bears with it the choice to feel guilty or not. I will never be a pancreas, and thus I am in a fight for my child’s health that I will lose sometimes. I can’t make every blood sugar perfect. I can’t take diabetes away from him. You are right Barb – we can only do our best. I’m still working on accepting this.

  4. The way I handled that feeling that I might kill my husband if I didn’t manage his diabetes properly was the cynical notion that nurses and doctors give pils and medication all day long and never feel guilty if they blow it so neither will I. I hope this helps, but Barb will probably delete it.
    We have just concluded a provincial election. Strangely, the CDA doesn’t ask for a restoration of insulin strip funding for Trillium Drug Plan members or for Ontario Drug Plan members, nor does it ask that more pump funding for people with type 2 diabetes on insulin or for pregnant women using insulin. Do we need a better organization representing diabetics? I think so. I’d also like to see CGMS funded. My husband’s bg are so wonky that only a CGMS has prevented his premature death, I’m sure.

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